By Jake Harris | Published Saturday, April 11, 2015
This article originally appeared in the Wise County Messenger. It would go on to win the National Newspaper Association’s “Best Feature Story, First Place in Twice-Weekly Newspapers with a Circulation of 4,000-5,999” award for 2015.
Tristan Hastings is an average 17-year-old high school student. He enjoys sports, loves to talk about fast cars and usually makes more time for his hobbies than he does for school.
He wants to become a chef when he grows up and open a chain of restaurants in college towns that cater specifically to out of state students who miss home-cooked meals. He enjoys spending time with his friends and family and has a surprisingly broad view of the world for someone his age. He has a vision for his life, despite not being able to see 3 feet in front of him.
About a year ago, Tristan was diagnosed with Stargardt Disease, a form of macular degeneration that afflicts only one in every 10,000 people, usually within the first 20 years of life. It affects more than 25,000 Americans, and early symptoms include difficulty reading and noticing gray, black or hazy spots in the center of one’s vision.
Tristan first noticed the problems when he had trouble focusing on everyday objects.
“I would squint all the time, and I was a lot more sensitive to sunlight,” he said.
Soon his mom, Tammy, noticed some issues, too.
“He always wore glasses, and his vision didn’t ever change that much, but there would be times when we asked him to pick something up in the house and he wouldn’t be able to find it,” she recalled. “Then he started reading with his books a lot closer to his eyes and started moving closer to the TV, and that was when we figured, this isn’t just a teenage boy ignoring us, this is something we need to get looked at.”
They decided to go to Decatur optometrist Tad Billmire for help. He diagnosed the disease right away.
“In my entire career, he’s only the third person I’ve seen with this disease,” Billmire said. “He can see peripherally but not right in front of him, and the biggest letter on the eye chart will appear completely blurry in his best eye. But given his condition, he’s a delightful kid, and he has a terrific attitude about dealing with it.”
Billmire explained to them that Stargardt is a recessive genetic disease with no specific cause.
“Basically, a defect occurs in the retina that creates toxins, and those slowly deposit in there, and that causes the vision to get worse and worse over time,” he said. “It’s kind of like how elderly people get macular degeneration, except this occurs in young people.
“A lot of kids, when they come in here, they actually want to wear glasses because it’s fashionable now,” Billmire said. “And they’ll fake their symptoms with just a little bit of knowledge about it to try and game the system. One of the biggest tipoffs was that Tristan’s prescription changed drastically, and he really had no idea what was going on.”
A SHIFTING PERSPECTIVE
“When they told me I couldn’t drive, I just kind of sat there, like, ‘Oh, OK,’” Tristan recalled. “That was the thing I was most excited about at my age, and once they told me about the disease, the car was the first thing I thought of.”
He’s 17 and won’t ever get to drive a car on his own, but Tristan doesn’t mine his situation for pity. He goes for laughs instead.
“I feel like if I make a joke about it and make people laugh, then they won’t say anything to me about it,” he explained.
His jokes are often self-deprecating to disarm others.
“I would be able to see that, but I can’t, cause I’m blind.”
“I think I’m going to get a bumper sticker on my car that says BLIND FOR SPEED on it.”
“I guess I’ll get really good at blind dating in the future.”
His family joins in on the good-natured ribbing as well.
“Sometimes he’ll be in the room and can’t see us, so he doesn’t know we’re there, and he’ll say something about one of us. We’ll just sit quietly in the room letting him think we’re gone,” said his dad, Alex. “Or we joke like he’s a T-Rex from ‘Jurassic Park’ and say, ‘If we don’t move, he won’t see us.’”
Tristan’s sense of humor developed long before his diagnosis. He’s the only boy in a family of seven sisters.
“It’s nice because I get to have my own room,” he joked.
All kidding aside, he said he does face a few challenges.
“Just figuring out where everything is and making sure of my surroundings is my biggest challenge right now,” Tristan said. “There’s times when I’ll just sit in a room and try to figure out where everything is.”
When Alex and Tammy learned of Tristan’s diagnosis, they seemed to take the news harder than their son.
“I’m the sales manager for a roofing company, and it’s very rewarding when there’s storms and disasters,” Alex said.
Rain and hail-storms were nothing compared to the storm they are currently facing with Tristan’s eyesight.
“It was hard, you know, and I’m still at the point where I want to do his laundry for him or do other, everyday things for him because as a mother it’s just so tough to see one of your children struggling,” Tammy said.
Alex is a little tougher.
“I try to help him, but at the same time I don’t want him to be coddled,” he said. “And I do sometimes feel bad about watching him go through his daytoday, but I’m never going to let him use his condition as an excuse to not do something or to do it halfway.
“I’m going to always push him to try harder,” Alex said.
Since Tristan and Alex are the only males in the family, their time together got a lot more precious once Tristan’s vision started declining.
“We used to play golf a lot, just the two of us, and now … hopefully one day we can get back out there,” Alex said. “But we’re both big coffee drinkers, and that’s our thing now. We’ll wake up before everyone else and just share some coffee and talk.”
Both parents agreed their faith helps them deal with the situation.
“Our faith is a huge part of our life, and Tristan amazes me with the faith that he has and his knowledge that God’s always there,” Tammy said.
Alex added, “My faith has taught me that things just happen, and instead of talking about lemons, let’s just make some lemonade.”
Tristan still wants to go to college and become a chef, but right now his greatest joy is working as a trainer at Bridgeport High School, where athletic trainer Billy Newsom has nothing but praise for his student.
“He’s always very quick with a joke, and he’s the hardest worker I’ve ever seen,” Newsom said.
Tristan came to Newsom in the eighth grade during career day when he was looking for extracurricular activities in which to participate.
“He walked right up to me and started asking these questions, very intelligent questions for a kid his age, and he just really enjoyed it,” Newsom said.
Newsom, like Tristan’s parents, sees a lot of potential in his future.
“We talk a lot about not letting other people tell you what you can’t do,” Newsom said. “Hopefully he won’t listen to people who try to limit him, because he doesn’t need to be putting those limitations on himself.
“As long as he keeps his focus, he should be able to adapt.”
Tristan loves working as a trainer. “It helps me learn about medical stuff, which is fun, but it also gives me something to look forward to every season, not just football but every sport all year-round, because the busier I am, the harder I work,” Tristan said. “The best thing I like about it is just learning and helping others.”
PREPARING FOR THE FUTURE
Although Tristan can still see, it’s limited. His vision is bad and will continue to deteriorate.
That’s why he’s learning now what it will be like to be totally blind.
Every few weeks he meets with a specialist from the Special Education Education CoOp who blindfolds him, gives him a cane and helps him learn to make his way around a crowded classroom.
“It’s kind of hard, and it’s hard not to peek,” he said. “But the training is worth it, I think.”
The blindfolding is just one aspect of his strategy for coping with his impending blindness. He has a laptop with an extension that functions as an overhead projector, illuminating and magnifying his papers and reading material on a screen so he can better see his assignments.
“It’s kind of hard to do anything to cheat now since my stuff is out there,” he joked. “My classwork and tests are on bigger paper so my teachers make it easier on me.”
His favorite subject is art, and he loves to listen to country music and some rock. Beatles posters, along with TCU, Texas Tech and Texas A&M memorabilia line his bedroom walls. He also likes to read his Bible, a discipline that he said has grown his faith a lot, much like his parents.
“It keeps me grounded, and I know that even though I might not have wanted any of this to happen, I can still have faith,” he said. “I can still live a pretty normal life.”
There is currently no cure for Stargardt Disease. A possible treatment option is using embryonic stem cells to replace the bad cells in Tristan’s eyes, but that’s not a route the family wants to take.
“I highly disagree with using embryonic stem cells, and I think adult stem cells are just as good, but funding for that obviously is a huge issue,” Alex said. “For now, I would definitely like to start something to bring more awareness to Stargardt Disease, and since it’s so rare, I’d like to start something to spark a little more knowledge about it.”
In the meantime, Tristan will continue to work with Bridgeport athletics until he graduates, and he’s currently working on some more recipes for his restaurant.
He may not be able to see in front of him, but he can see all around. Maybe that’s what really counts.